Tuesday, September 6, 2011

Ok that title is a bad "Little Shop of Horrors" reference but I like to be witty.

If you know us, you know we like food. Like, really really like food. We've been known to drive to other states to try pie or plan vacations around restaurants. I hesitate to call us "Foodies"-it sounds so "hipster"-so let's just say "Food Aficianados".

This is all the more reason why food has been so important for me in Xavier's life. Food connects us to who we are and where we are from. Food can bring back a memory and take you back to a certain place and time. Food cheers us up when we are down and makes good times that much better. I mean come on, BIRTHDAY CAKE! But food is also the basis of a healthy life. It makes us grow big & strong. It makes our brains all lubed up to function well. It keeps are heart in tip top shape. These are all things that a little boy like Xavier needs.

Food + Xavier has always equalled "Mommy Anxiety" for me. Maybe it's because it took him so long to take a bottle. Or maybe it's because it's so important for him to gain weight and get stronger. But it's also been because I've always felt like we were bombarded with words like "aspiration", "G-tube", "swallow study", "lip closure", etc. etc. These words aren't necessarily bad words. They just aren't words anyone really feels like hearing. Sometimes, I wonder if he's eating enough or drinking enough. I tend to forget that, like any kid, there are days where he tells me to beat it and he doesn't want what I'm trying to shove in his mouth. It's compounded by the fact that, unlike other kids, he can't say "Hey Mom, go get me a glass of milk. Chop chop."

I've learned that I'm not the only parent of a child with special needs to think these things. In fact, nutrition is something that is talked about a lot on special needs message boards. I think even though our children tend to struggle sometimes in these areas (and even if they are completely G-tube fed) it makes us as parents all that more diligent about what we feed our children.

Because of this Xavier eats better than probably most people I know. Myself & Anthony included. When we go to Whole Foods most of the time it's for him. He gets lots of organic fruits & veggies, a variety of beans & grains, yogurts and juices.

I always knew I wanted to make my child's baby food. Now don't get me wrong, there are plenty of jars of Gerber and Beechnut in our pantry. But cooking up carrots for your child that you bought from the Farmer's Market really has such a great sense of satisfaction. Tonight, for instance, I made Xavier's meat for the week (which happened to be a lovely locally raised ground lamb browned in coconut oil and butter with garlic and sage. Ooo la la). I've learned that making a batch of ground meat and then freezing it into ice cube trays is a great way to sneak meat into his meals. He tends NOT be a fan of meat. Unless you count bacon and it's off shoot bacon grease. That's right, I said bacon grease.

One of the other things of having a child who needs a high caloric intake is that you look for ways to add MORE fat into meals. Would you like a splash of heavy cream with that? How about a cup? More butter sir? And let me tell you, my kid might be on his own growth curve but he's got a double chin thanks to all that cream, butter, and oil. As a matter of fact out at lunch the other day I ordered him a vanilla milkshake and mashed potatoes & gravy. Which unfortunately I made the mistake of giving him the milkshake first and then the potatoes and you would've thought the potatoes were hot lava with the face he made.

I guess what I'm trying to say is that no matter what way our child eats being able to provide them with healthy meals (and fun sweets) is part of being a mom. I might not be able to control the fact that Xavier has seizures or some crazy gene but I can give his body the best food possible so that he can continue to grow and make strides in his development. Seeing him try a new food is just as fun and rewarding as having him learn something new because for him it IS learning something new. He learns how it tastes and what it feels like. He learns what he has to do to chew and swallow it properly.

So in case anyone is curious of some of the things we do feed X, here are some:

*I use Gerber, Beechnut, and Earth's best baby foods. They both are great and each have their advantages. I have found that Beechnut tends to have the most calories.

*I enjoy buying Ella's Organic, Plum Organics, Happy Baby, Earth's Best, & Sprout baby food. All of these foods are packaged in squeezable pouches. These are GREAT for the diaper bag. I tend to buy them when on sale at Target or Babies R Us because they are little more expensive than others.

*Not too long ago I discover NuturMe baby food. These are packages of dehydrated & powdered fruits & veggies that you can add the liquid of your choice to. This is great because I can add heavy cream to them but I also use them as thickeners in foods that might otherwise be too thin. It's much healthier than always using a rice cereal or such.

*I use Gerber, Plum Organics, and Earth's Best rice & oatmeal cereals. So far I like the Earth's Best the most. The consistency is very fine and mixes well into foods.

*We make lots of smoothies. Whole Foods & Walmart are the only places I can find full fat yogurt. One of X's faves is yogurt with peanut butter (we use Peter Pan whipped peanut butter because it's smoother and lighter in texture) and bananas. We also buy or freeze fruit. This is great for smoothies.

*We puree lots of fruits and veggies. A big hit is beets. Take whole beets with skin on, wrap in aluminum foil and place in oven on rake at 400 for 30 minutes + until beet is knife tender. While still hot place beet in plastic bag and run cold water into it. Rub the plastic bag around the beet and this will help take off the skin and save your hands from turning a lovely shade of fuschia. Chop and puree with chicken stock.

*I swear by the Magic Bullet. Worst name ever for a blender but it has been a God-send.

*Don't be afraid to puree foods for your child that are spicy or you think they might not like. Last week Xavier had his first taste of Indian food and LOVED it. Unless your child has a very sensitive stomach or reflux, what's the worst that could happen...they'll spit it or eat it. And they might have a nice surprise in their diaper. lol

*Don't be afraid to puree what you are having for dinner for your child. Xavier has had chicken pot pie, tacos, and more. I honestly think this has helped him eat so well because it has helped his palate be more receptive to different textures and flavors.

By no means am I a dietician or nutrionist. These are just things we do for Xavier and I wanted to share. Whether you have a child with special needs or not healthy meals are essential. (Geez I sound like an ad for the Food Pyramid. Which I've heard is not a Pyramid anymore. Sigh, I'm getting old).

Thursday, July 28, 2011

Anthony & I like to travel - no question about it. Whether it's driving somewhere new or flying to a different country, if we can do it we will. Obviously we haven't gotten to travel much since Xavier has been born. This really hasn't been because of his special needs but just because he's a kid and travelling with a kid ain't easy. Take it from (at the time) two childless newlyweds who travelled around Spain for 10 days with two friends and a six month old. Said six month old couldn't have been a better baby. She was a total sport and after one minor exorcist-like vomiting incident in the car shortly after landing in Espana, there were few baby related bumps in the road. The problem is that kids don't travel light. You ain't going anywhere and a kid is just packing a carry-on. Nope. And especially not a kid with special needs.

We decided we wanted to do a little getaway to some place we've never been and to go as a family. Ultimately we picked Pittsburgh. I have many friends who will say, "Dear Lord, why Pittsburgh?". Well the deciding factor was that we could drive there, it's a small city, and I wanted to go to the zoo.

Anthony and I shared one suitcase and Xavier had his own suitcase. And a cooler. And a pack-n-play. Reference last sentence where I said kids don't travel light. But I have to say that we actually did better than we have in the past with just going to Ocean City. Basically we wanted to have our bases covered but, as Anthony had to remind me, we are in a major city. People in Pittsburgh have kids, they use diapers, we aren't in a random country. Ahh yes, you are correct. But will we be able to find Naked Juice? We need drink thickener. How much food should I pack? No to mention that he needed multiple outfits. What if a strong breeze came through and he got cold? And I bought him a "chilly-towel"...it could get too hot and I don't want him to over-heat. Ok, so I'm a little neurotic and maybe just a tad overprotective. But he's my little bean and he can't tell me what he needs so I need to think ahead for him.

So after I made sure I had a multitude of choices (of both the clothing and food variety) we were confident about our little trip. The boy totally enjoyed himself! This time he was the trooper. Up at 7am and stayed up through the whole ride and even after we got there. Same thing the next day (I think this was a product of the pack-n-play though...he is way too good -so he thinks- to sleep on something so hard now and he ultimately ended up in bed with me where I had a blissfull smiling little boy chewing his tongue in my ear in the darkness). Our only snafu was that we had requested a fridge in the room but it never got there. We improvised used the ice bucket when we wanted to cool a drink down so it was really no biggie.

Our first real family vacation went off without a hitch! Lots of bad food was eaten (by both mommy & daddy and Xavier...everyone needs ice cream for dinner at some point!), lots of smiles were had, and we had a great time as a family. No worries about doctors or appointments or therapies. Just us doing what families do.

So very unenthused of a 5 hour car ride

Mommy making X pose for a pic at the end of a long day.

Frozen yogurt for dinner? Of course.

This moment was the absolute best. Xavier thought the suspension bridge was hilarious. I was laughing so hard at him I could barely take the picture.﻿

A little foot comparison. Note to self, don't meet a polar bear in the wild.

﻿Family pic.

Stingrays are awesome sensory input!!

﻿After a little misting.

Pooped. Pooped. And more pooped. This would be a great promo for the Westin's "Heavenly Bed" collection.

Ok, so maybe it's a little over-kill but the head rest and stroller fan come in handy.

Thursday, June 30, 2011

As I've stated before, I'm a horrible blogger. I keep up with blogging about as much as I keep up with a diet or any other kind of "great" idea I get. The reality of it is that sometimes there's just not enough time in the day to DO anything besides wake up, work, feed the boy, feed ourselves...lather, rinse, repeat. It's like Groundhog's Day.

So a few months back we got the call that our geneticist had found the genetic mutation that X has. Technically our geneticist had not "found" it but found the smart people that found it. That's a lot of "founds". So long story short our genetic counselor came across an article in a scientific journal and she thought it sounded like what X might "have". She asked the smart peeps in the Netherlands if they would run his sample and they did. Lo and behold they found the pesky little mutation that is responsible for the Bean's issues.

This all means that now we have a diagnosis and name for what he "has". A name that no one knows except Anthony and myself and our doctors. A name which I refuse to print because I have friends and family whom I love dearly but who are prone to fits of extreme Googling (you know who you are). Although very little bit can be found about the syndrome it doesn't do anyone any good to read and compare. It's not like you find out you are a diabetic and now you know you need to check your blood sugar. Syndromes are vast and people don't always present the same way with the same syndrome. What we know so far about Xavier's syndrome is nothing that we didn't already know about him. He'll need to be followed by docs but again that's nothing different than what we already knew or did without a diagnosis.

I like to think that in this whole crazy journey through parenthood and having a child with special needs we've been very realistic.

So what do we know about X and his syndrome:

Children with this sydrome have seizures (and seizures are more common than you think--you probably know someone with Epilepsy)

Children with this sydrome are developmentally delayed (we don't expect X to one day wind up President. For now we are happy with some better head control, playing on the iPad, and an affinity for all things sweet & yummy)

Children with this syndrome have a hypospadias. (Big shout out to our urologist Dr. Gearhart for some superb pee-pee fixing)

Although this is genetic it is a mutation. This means that it is not likely to reoccur in future little Byrds.

Wednesday, March 30, 2011

I've been saying that I'm going to start writing about some of my favorite products. Because really, we all know I love to shop. AND I love a bargain. AND I love "regular" products out there that can do double duty and work great for a special needs kid AKA Xavier. What better way to sing my praises of these products and hope that maybe they will work well for other parents than to write about it. I hope to make this a weekly thing (on Fridays hence the title of this post).

So let's begin. Way back when the Bean was still a bean and not yet a sprout he got the bright idea in his head that he wasn't digging on bottles so much any more. He thought they were great things to chew on but not so much to drink out of anymore. It went something like this: suck suck chew chew cry cry. When people worry you to hell and back about your kid's weight the last thing you want him to do is to take a vow against the bottle.

So began the quest to find the perfect sippy cup. This involved many a trip to Babies R Us, Target, Walmart and just about any place that sold anything with the words "sippy" and "cup".

COPYRIGHT ASTRID PHOTOGRAPHY

Many dollars spent later I came across the Tilty Cup. The sun shone, clouds parted, angels might just have sung. Not only does the Tilty Cup keep liquid at an angle for easier drinking (and holding for Mom and Dad) but it has a variety of lids with different flow. What's that? Can I get an AMEN! They have a slow flow, regular flow, and smoothie lid (also a travel lid). We skipped the slow flow and went right to the regular flow. X took it like a champ! Soon we graduated to the smoothie flow. We use this all of the time now because X gets thickened liquids and smoothies. What is really great about their lids is that the mouth piece has been the perfect size. It's not too big nor is it too small (perfect for X and his lip closure) and it's hard. The soft spouts of other sippy cups turned Xavier off; I think because they still reminded him of a bottle.

And you may think, what happened to all those other sippy cups that you bought? Funny story. In an effort to clean out our cabinets he took all of the other cups out and decided that they had to be put away with all the other baby stuff (in case there's another Byrd sometime in the future). Great idea! What does he decide to put them in? A brown paper bag. This would not be such a bad idea had he not set the whole bag next to the OTHER brown paper bag that had recycling in it and then took it out to the trash. Yep, all those sippy cups in the trash. Well, the recycling. At least the recycling.

Friday, March 11, 2011

Race fans, hotrodders, 2 year olds! Yep, Sunday is the day my bean turns into a sprout. When he was smaller I always wondered how we would celebrate birthdays or do "normal" things? What the hell did that mean? Seriously, I thought that?! We celebrate them just like anyone else...with ridiculous amounts of sweets, too many presents, and lots of love.

Round #1 of birthday festivities included Mommy (and her oh so bright ideas) to make some treats for school. I wanted to make something fun but also enriching for the kids. So I decided to make cake pops and cupcakes! Cake pops because they were just fun and cupcakes so the little ones who might be tube feed can squish them and play with them. Believe me, when your kid has special needs you look at everything as an experience. The cake pops recipe came from Bakerella. She is amazing!

My venture into cake pop making started Wednesday night with making the actual cake. Thursday I go crackin' at 5 and didn't stop until almost 9. The night actually went by fast because they were so much fun.

Wednesday, February 23, 2011

Where in hades has the time gone? I've neglected this blog something terrible. But beyond that days, weeks, and months have flown by! In a few short weeks my bean, my little itty bitty boy will be 2! The big t-w-o! As I think most parents of children with special needs would agree, birthdays are bittersweet. We rejoice in how far our children have come but parts of us are saddened that at 1 or 2 or 5 or 10 they aren't doing what their typical peers are. Nonetheless, my electric boogaloo has gone from this:

To this:

That's pretty far in my book. Xavier is far from a typical two year old but he is progressing on so many levels. This is thanks in part to his therapists and his wonderful daycare. Not to mention his spirit and determination. He's definitely taking in the world more. So we will celebrate him and everything he is -- from his crazy hippy hair and wobbly little head, down to little feet and stinky toes!